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Fibromyalgia-Osteoarthritis and Joint Hypermobility Syndrome

Posted: Wed Sep 24, 2008 3:16 pm
by Rik-Blades
This is a lengthy post, but please bear with me, I appreciate the time taken to read this and take it all in.
I'm not too sure which forum section this belongs in, but i'll post it here and see where it goes.

My wife has the above conditions, for which she is taking certain medications under the advice of the local health authority. She has had these conditions for the past 6 years, with the exception of Joint Hypermobility syndrome, which she has had since puberty.

The other two conditions reared up after giving birth to our two children, and has got progressivley worse after giving up work to be a housewife and mother.

In order to be clear, I feel I should detail a little history here to allow the pieces of the puzzle fall into place.

Although she was aware of the Joint Hypermobility syndrome all her life, the job she used to do and the step aerobics she used to do kept this pretty much in check. She was extremely active and had good muscle tone (one of the reasons I noticed her! :lol: ).

After giving up work (and step) to have children, she has gotten progressivley weaker, which I beleive has aggrivated her Osteoarthritis (which runs in the family and is a side effect of Joint Hypermobility Syndrome). Financial stresses etc then brought about the Fibromyalgia, which is a muscle fatiguing condition, similar to ME and MS.

The result of all this is my wife is now classed as disabled. She finds it very difficult and painful to walk more than a few hundred yards, sometimes she will need a walking stick to help her. For example, a trip to the supermarket will leave her suffering for a few day's and her quality of life is now getting to an all time low. She suffers pain notibly in her hips and lower back.

On top of all this, her diet is very poor. A couple of years ago she started to suffer constipation. After much experimenting with her diet, we established that Gluten was a factor in this problem. As a result of diet changes, her diet does not contain much protein or fat, as she has to avoid most types of processed foods and cant stomach fish or meat. After re-evaluating the Gluten problem, it is now looking like she is becoming Coeliac.

The Doctors dont seem much use (U.K. NHS). Instead, they prescribe a cocktail of drugs and laxatives, she takes around 200 pills a week.

She is 37 years old, 6ft tall and far from unfit, she is not grossly overweight at 160Lbs. I would estimate 25% fat. I feel that the Health Authorities are letting her down. We have to fight to get reffered to departments for scans and tests that should be automatically investigated in order to sort or solve some of the outstanding questions and as yet, cannot offer any sensible advice othet than 'here's another pill for you to take'. I cant help but feel we would get somewhere if we were 'Private' medical customers.

I personally, do not accept this, and have decided to take matters into my own hands.
Right at the beginning of her problems, her Physiotheripist suggested resistive exercise would help, but they eventually shyed away from this once Fibromyalgia became an issue.

I want to start her on a high protein diet, followed by some resistive training (obviously very light to begin with), but to increase in intensity over time. I believe that her gradual muscle loss is slowly aggrivating all her conditions (even the constipation, given bowel movement is muscular).

I'm wondering what a suitable starting routine might be? She has trouble with a couple of disks in L4 and one in her neck, so this must be taken into concideration. Before starting any training, I'm thinking of a high protein diet for a few weeks before starting out to prepare the body a little.

Any feedback would be most appreciated, we are going to do this anyway!

Thanks in advance,

Rik and Marylea

Posted: Wed Sep 24, 2008 3:35 pm
by stuward
Try looking at paleo type diets. Some are more strict than others. At the most strict they eliminate all dairy and grain. It's probably a good idea.
Try www.marksdailyapple.com for some ideas.

The medication are probably creating problems of there own. I'm sure the diet is a major part of the problem. As long as there is some sort of exercise program with walking and some resistance training, it will all be good.

Posted: Wed Sep 24, 2008 3:37 pm
by TimD
It's a general question. Looks like it's in the right place. Because of the disk complications, although I have ideas, I think Jungledoc is probably the only pne here qualified to suggest a routine. The fybromyalgia thing is a complication too. My ex had it, and I don't think it even got recognized as an actual identifiable problem until the late 90's, and even then there didn't seem to a consensus on how to actually treat it.
As to the diet, I'm not clear on exactly how YOU define a high protein diet, but somehing along the lines of Berardi's 7 habits are a good loose formula to start with. There is a link in the Diet and Nutrition stickies to it. Mostly lean proteins, fruits , veg, good fats, limited grains etc. Seems to clear a lot of problems up by itself as to hypertension, etc. Might want to read through it.
Tim

Posted: Wed Sep 24, 2008 4:15 pm
by Rik-Blades
Thanks for the replies so quickly guy's, really appreciate it.
stuward wrote:The medication are probably creating problems of there own. I'm sure the diet is a major part of the problem.
I'm convinced of this.The sheer amount of chemicals etc worry me on the effect these will have in the long term. Painkillers I hope to lower, mainly muscular when she develops some extra muscle and the fatigue is not so bad.
TimD wrote:As to the diet, I'm not clear on exactly how YOU define a high protein diet, but somehing along the lines of Berardi's 7 habits are a good loose formula to start with.
Anything thats higher than what she eats at the moment! Mainly she opts for cheese and salad, rice cakes as an alternative to bread. A few veggies, but not much. At the moment she will only eat at most 3 times a day. I estimate her protein intake is well below maintenance, hence her muscles are slowly being devoured by the body.

I'm going to start her on my diet, as a lifter. 5 meals a day, with P,C and F at 33% each-ish! If I have to use my whey protein, then so be it...looks like i'll be ordering enough for two!

Generally, she'll eat what I eat, More leafy greens, brown rice, whey, cheese, olive oil and eggs. She doesn't like fish, shame because I eat Tuna by the ton. The only meat she can stomach is beef steak and pork! nice if you can afford it for every meal, but will be looking at other alternatives anyway as i'm on my cut at the moment and looking for new things to eat. I'm also thinking of supplimenting fish oil, Magnesium and Zinc.
TimD wrote:The fybromyalgia thing is a complication too. My ex had it, and I don't think it even got recognized as an actual identifiable problem until the late 90's, and even then there didn't seem to a consensus on how to actually treat it.
Tell me about it. The Doctors still screw their faces up at us when we meet them.

To me, it all seems quite logical after reserching for my own gains in lifting and all the advice i've had from this site. If you allow the body to break down it's muscles, can only make things worse and even explain most if not all her other problems.

Walking as exercise will be a problem to start with, this is why i'm thinking some low rep, few sets to start.

Thanks for the links, will be reading with interest.

Posted: Wed Sep 24, 2008 4:40 pm
by nygmen
I think it should be said that your wife and yourself are brave, intelligent, and very strong people. It seems like you want to live life rather than let life live you both.

Congratulations and I wish you only the best of luck, and may whatever may be omnipotent grace you.

It’s inspirational.

Posted: Wed Sep 24, 2008 10:12 pm
by Jungledoc
Wow. A tough combination of problems.

I'm just going to ramble a bit, and hope something helpful is mixed in somewhere.

Has your wife been seen by a rheumatologist? Does she have 1 consistent GP?

First of all, resistance exercise is beneficial, not harmful to both fibromyalgia and osteoarthritis, and I assume it probably is helpful for the hypermobile joints, too. So without qualification, I'd give my opinion that she should be exercising.

Second, diet. Either I missed something, or you didn't explain it all, but it sounded like your wife thinks there is gluten in protein or fat. Lots of people are gluten-sensitive. Gluten comes from certain grains. There is a lot of stuff on line (at least there was last time I looked a few years ago) about gluten-free diets. High protein, moderate-fat should be easy while still avoiding gluten.

Third meds. This is really tough. I've been on the other end of this problem many times. The patient is on 15 meds, 8 started by me, the others started by various other docs they have seen. There is probably a good reason to be on every one of the meds. How do you cut the list down to those that are truly needed?

The first thing is for the doc or the pharmacist to enter all the meds into a good drug interaction computer program. This will generate a long list of potential interactions, many of which will not be significant, but which is easier to deal with than looking all the drugs up one at a time. A mere human doctor cannot possibly know and recall all there is to know about the potential for interactions.

Next, the doctor should think through how critically-needed each med is, and how best to minimize the list.

This demonstrates the importance of the family doctor. In the NHS, are you assigned to a particular GP? I'd say that more than anything else, she needs a single doctor who will be her advocate, but will also be able to be tough with her. Getting off of some meds is difficult, but a good doctor-patient relationship is critical.

The meds that are potentially most useful in your wife's situation are anti-inflamatories and anti-depressants. These latter are often very helpful in fibromyalgia, for reasons that aren't necessarily real clear. The older class of anti-depressants called the tricyclics, while seldom used any more to treat depression, are extremely helpful in chronic pain syndromes. They are used in low doses, and side effects are seldom serious. The ones to try to get away from if at all possible are narcotic pain meds, codeine, oxycodone, hydrocodone, etc., etc. Also, a lot of so-called "muscle relaxants" are not really very helpful, and have troublesome side effects, and are best avoided, in my opinion. Finally, the "minor tranquilizers" such as diazepam (Valuim), lorazepam, etc., etc., are best avoided for long-term use. Once a person has taken them for more than a few days, it's often difficult to stop.

Also, I'd encourage your wife to use heat and ice. This would require experimentation, but can often be very useful to reduce pain.

Sleep patterns are important, and your wife should get adequate good-quality sleep. This is too complicated to get into here, but there is good (and bad) material on line.

The most difficult aspect of fibromyalgia is the psychological part. Having any sort of chronic pain syndrome is frustrating and stressful. But how much does stress, anxiety, depression, attitude, etc. contribute to fibromyalgia? Better minds than mine have tried to define it. Fibromyalgia is clearly not "just in your head". There are definable, reproducible physical findings associated with it. But there is also no doubt that what's going on in your head can make it better or make it worse. But what do you do about that? I don't honestly know. Maybe that's why anti-depressants are so helpful. Counseling or therapy may be appropriate for some, but in my experience are not a panacea. Whatever a person can do to maintain a positive outlook is helpful, but challenging when you're in pain all the time.

Well, like I said at the beginning, I hope there is something helpful mixed in there.

If you want to PM me with a list of the meds, I'll try to comment as much as I can without knowing the situation first-hand.

Posted: Thu Sep 25, 2008 5:12 am
by KPj
This is way beyond me. However, with the gluten problem - i'm a member of Precision Nutrition, there's atleast a handful of people on the PN forums with this condition. As jungledoc mentioned, it's strange that she/the doc or whoever are blaming protein and fat. Wheat (a carb) is the main source of gluten.

I will have a browse on the PN forums about the gluten thing and see what info I can dig up. Some of the members give very detailed accounts of what they can and can't eat, and get help from the numerous pro's on the forum. Ya know, if it's feasable, it could be worth getting PN. changed my life to be honest, but if you have specific problems, the help / support you get is unbelievable. The good Doc (Berardi) himself often pitches in.

Hypermobile joints can deffinitly be helped / fixed with exercise. I actually had 'hypermobility' in ONE of my shoulders. Training for stability is largely the answer to that - in a very broad, general sense.

Now, i'm not really the right guy to advise on stuff like this. But I can certainly help get you some info. I'm an info junkie. With Fibromyalgia, there are common dietary deficiencies such as B vitamins and ammo acids. From the stuff that i've came across on PN, I really feel you could make a difference through nutrition alone.

I'll sniff about and come back with some information...

KPj

Posted: Thu Sep 25, 2008 6:17 am
by Rik-Blades
Thanks for all the responce, i'll post a list of her medications later tonight when I have a little more time. There's quite a few!

I'm sorry for the confusion here, we are aware of where Gluten comes from, we're not blaming Protein or Fat for this. Allow me to clarify.

As a result of eliminating Gluten from her diet, she has basically shyed away from almost all food types, procesed food often contains wheat or Maise Starches, even Oats and Barley. This led to her really only eating salad and a bit of cheese. I believe this has lead to a serious lack of Protein, Fat and even Carbs and her body is now in serious 'starvation' mode.

So, my idea is to take her in hand and jump start her metabolism, eating 5 meals a day, high Protein and a good helping of healthy fats and Carbs from lots of veggies. It means that all foods will be made by me, but this is no problem, as my diet is basically what she needs to eat and it's easy to cook for two.

This, coupled with some resistance training (when she's up to it) should start to build muscle and hopefully reverse the obvious damage that has occured. Surely this should help with the fatiguing she experiences and maybe, get rid althogether!?

Anyway, will post again later, thanks again...

Rik

Posted: Thu Sep 25, 2008 7:58 am
by stuward
Rik-Blades wrote:...As a result of eliminating Gluten from her diet, she has basically shyed away from almost all food types, procesed food often contains wheat or Maise Starches, even Oats and Barley. This led to her really only eating salad and a bit of cheese. I believe this has lead to a serious lack of Protein, Fat and even Carbs and her body is now in serious 'starvation' mode....
The thing missing is meat fish and poultry. I stick by my recomendation for a paleo type diet. All grains potentially could cause issues. It's better to exclude them all until the situation settles, then reintroduce them one at a time if you want.

There is no way to get adequate calories on a no grain/no dairy diet unless you eat meat. Unfortunately, most meat is grain fed and drugged up on antibiotics. You need to find a source of wild or grass fed meat.

Posted: Thu Sep 25, 2008 8:13 am
by pdellorto
This sounds like a really hard situation, and like KPj said, way above me.

If you do go with Stu's recommendation for a Paleo-type diet, there are a number of forums you can turn to for help. The folks on Performance Menu are generally very helpful:
http://performancemenu.com/forum/forumdisplay.php?f=8
They're often a good source of recipes, and it's a useful springboard to more paleo resources. I don't eat paleo but I try to minimize my grain consumption so I look in there often.

I hope you guys can get this turned around and get on top of it. Good luck, and it sounds like you're really putting in the effort you'll both need to succeed.

Peter

Posted: Thu Sep 25, 2008 8:29 am
by KPj
Sent you a huge article on the subject through private mail. Didn't want to disrespect PN or anything by making it public (it LOADS of info, too). It's by Jacob Teitelbaum, a board-certified internist and director of the Annapolis (Maryland) Research Center for Effective CFS/Fibromyalgia Therapies. Sure SOUNDS like a good source :smile:

Don't know if it'l help, but, worth a read through. Personally, I would pick out the common deficiencies and pick them up as a supplement. Try them and see if there's any difference. I also like Stuwards recommendation - but again, way beyond me, just brainstorming really. I also have next to no confidence in our NHS, for a number of reasons. It deffinitly helps to educate yourself a little.

KPj

Posted: Thu Sep 25, 2008 9:12 am
by jeffrerr
Sorry to hear/read about your wife's troubles there Ric, but good on you for helping mate, the best thing in any situation like this is to get as much education as you can about the issue and keep the docs honest!

As for the weights plan, I was doing a Nursing Practical Rotation on a little island called Bruny Island in Southern Tasmania a few years ago and they were doing an exercise prgram for older (65 to 75) ladies with sort of similar issues as your wife, arthritis, osteoporosis, rehabilitating broken neck of femur injuries and scoliosis. The trainer used a method similar to Pump, with light weight BBs and DBs at high reps to promote muscular endurance twice a week and one day of heavier lower rep ranges on the middle day of the week combined with body weight exercises and fit-balls to promote strength and felxibility. Over a 6 month period this had a high rate of success with the group. A few were even able to stop using walking sticks and one woman in particular that I still remember was able to go from 3 different morphine based snthetic pain drugs to an occasional paracetamol for pain relief. The one thing that may be missing for you is that this particular program also revolved around the social interaction of the participants, being an excuse to get them out of their houses and talking to people and motivating them to become more mobile.

I still have the Clinicla Nursing Managers email address so I'll shoot her an email to see if I can get hold of some of the routines or the trainer for you! The trainer was actually a qualified Physiotherapist, not a personal trainer too!

Anyway, good luck!

John

Posted: Thu Sep 25, 2008 1:15 pm
by Rik-Blades
Okay, here are the drugs as prescribed by the doctor plus the suppliments we have decided to add over the past couple of day's.
I decided to post them here, we dont mind all you guy's having a look, all feedback is appreciated.

Prescribed Drugs:

Dicloflex 50mg-one, three times a day (anti-inflammatory)
Bisacodyl 5mg-one in the Morning-two in the Evening (Coeliac)
Clomipramine 50mg-two at Night (OCD)
Metoclopramide 10mg-one, three times a day (Coeliac)
Senna 7.5mg-three in the Morning three in the Evening (Coeliac)
Simeticone 100mg-one, three times a day (Coeliac)
Zamadol 50mg-two, three times a day (Pain)

We added:
Glucosamax 1500mg 1 a day (Joints)
A-Z Multi vitamin
Cod Liver Oil
Magnesium

Last week, we approached the pharmacist, to make sure they are compatable and Gluten free (which apparently they are, although a couple do contain Maise, the Doctor clearly didn't have a clue or check!)
JungleDoc wrote:Has your wife been seen by a rheumatologist? Does she have 1 consistent GP?
Yes, she has seen a rheumatologist (several) and they just diagnosed and sent her on her way. The Doctor is the same Doctor throughout, but we have caught him out on numerous occations, suggesting drugs that she has already tried (prescribed by him in the past) and therfore, doesn't read his notes. He has also given her a mix of anti-depressants before that weren't compatible in the past too.
It has always been us that have suggested Laparoscopy's, sigmoidoscopy, MRI's and scans. Never has he instigated these off his own back. This said, he does now listen to our idea's and usually has no objection to reffering her, once we give him the idea first! For this reason, we will keep him and see what we can teach him.

It's very difficult to change your NHS Doctor here in the U.K. You can try and move to another surgery, but they are usually all fully booked out.
JungleDoc wrote:The most difficult aspect of fibromyalgia is the psychological part. Having any sort of chronic pain syndrome is frustrating and stressful. But how much does stress, anxiety, depression, attitude, etc. contribute to fibromyalgia?
Stress play's a major part. When she is stressed, things get a whole lot worse, which creates pain, which affects sleep, which affects stress...etc...etc...

I personally know the benefits of exercise on stress levels. I work out 4 times a week and if I didn't, i'm sure i'd crack up. Our life is now quite stress free, we still get the odd difficult time just like regular people, we just make a point of not letting it get us down too much. Her mental health is excellent, she's by no means depressed which is a major achievement concidering what she has to endure. I'm sure a good exercise plan would only help her more.
Kpj wrote:Sent you a huge article on the subject through private mail.
Yes, I got that, thanks! A most interesting read and pretty much all of that rings so true. If you find any more i'd be very interested. my email address is [email protected] I'd be very interested if anyone has any articles that may be relevent. Thanks again.
stuward wrote:The thing missing is meat fish and poultry. I stick by my recomendation for a paleo type diet.
This is so interesting and we had never really concidered this, it raises some points regarding foods that we take for granted. Will be looking into this alot more. Thankyou.
pdellorto wrote:I hope you guys can get this turned around and get on top of it. Good luck, and it sounds like you're really putting in the effort you'll both need to succeed.

nygmen wrote:Congratulations and I wish you only the best of luck, and may whatever may be omnipotent grace you.

It’s inspirational.
Thankyou for all your kind words and support. We both feel quite touched by the feeback and support we have found here in the forum.
Jeffrerr wrote:I still have the Clinicla Nursing Managers email address so I'll shoot her an email to see if I can get hold of some of the routines or the trainer for you! The trainer was actually a qualified Physiotherapist, not a personal trainer too!

Anyway, good luck!


Thankyou for your kind support also. Excellent stuff, we would really appreciate that, my email address is above if you want to use it. Do you think she can incorporate measures to include her two disc problems? (dry disc L4) and one in the neck?

Phew! anyway, gonna shoot for a few, gotta chase them kids into bed!

Thanks again guy's...

Rik and Marylea

Posted: Fri Sep 26, 2008 4:30 am
by KPj
With the disc thing - I have Dr Stuart McGills Ultimate Back Fitness and Performance. An amazing, and eye opening book. You'll struggle to get a better source when it comes to spine health, especially lower backs.

I'm about to start training my g/fs mum. She wants to tone up. However, she found out recently that she had a disc herniation. The specialist reckons it's been herniated for a long time - she was getting X-rayed for other reasons and this just came to light. Her back had started to ache over the past 6 months or so, but she never thought it was anything serious. I've read before that a lot of disc bulges can go without symptoms - fascinating. Anyway, i'm going off track. I expect to start training her some time over the next few weeks. I've told her that I will pay for her to see my own physio first, so that I can discuss it with him before I do anything (the stuff she's told me isn't all that clear as well, so i'm paranoid she's telling me the wrong things!). Her physio was a joke! Just pumped her full of anti inflammotrys and sent her on her way.

Anyway, I'm going to teach her how to move correctly. She'll learn how to stablise the lower back. We'll loosen up her hips and upper back. There will be nothing done in flexion (which is basically what I believe anyway). I'll start her on very low load stuff, like bird dogs, planks and push up progressions. No external load until she can move properly and / or it's pain free - because I will strengthen her posterior chain but sometimes even extension is going to cause symptoms. So really, i'll teach her how to move properly and do whatever exercises i can get away with that won't cause pain. You need to monitor pain the night following a session and the day after - joint pain doesn't always come to light whilst you're doing the task that's hurting it.

Also, more lower back injuries arw caused by picking up low load items like a pen, than lifting heavy weights. Repeated, low load flexion is now thought to be one of the primary cause of chronic back injuries. What that means is - fix the wifes posture! When sitting, do not sit with a flexed (rounded) spine. When picking something up off the floor, keep a neutral spine - use you're legs / hips as much as you can tolerate. Keep the lower back neutral - keep the chest up / out, not caved in. Keeping the chest up /out basically ensures a neutral spine in the lumbar region. Sit with a cushion / pillow at the lower back. If your wife sleeps on her back, place a pillow under her knees. This will put the spine in a more neutral position. So - teach your wife how the spine should move. Think about posture - it's awkward at first but will be come natural in time.


Often, we're stiff at the hips and upper back which causes compensation from the joints above and below. that leaves you with, from the bottom, knees, lower back, and cervical spine (neck). The simplest way to describe movements of the spine is to think of 2 hinges - one at the lower back, one at the midde back (around you'r shoulder blades and just slightly below). The lower back normall hinges too much because the movment at the top 'hinge' is restricted - normally stuck in kyphosis (forward head / rounded). Extension (bending back wards) is non existent in a lot of people (and instead they will hyperextend at the lower back). Same amount of compensation happens as result of poor hip mobility, too - hyper extending lower back instead of extending the hips. Hip flexors can be too tight, stopping your hips flexing enough when bending down, meaning the ROM will come from flexing the lower back instead. The lower back takes A LOT of abuse! If yuo get the hips and upper back loosened, and make some postural corrections, then you're going to take a hell of a lot of stress off both the lumbar and cervical spine.

And this is how I approach things - i'm not 'fixing' my g/fs mums lower back. That's way beyond me. I'm fixing her hips and upper back. chances are, this wil make the sympoms a lot easier to deal with.

I genuinely thought this would be a short post. hmmmm

KPj

Posted: Fri Sep 26, 2008 4:42 am
by KPj
Also,

As you know i'm from Scotland and deal with our beloved NHS. Back when I injured my shoulder my Doctor was a real spanner in the works. One of the Doctors that tarnishes the reputation of GP's everywhere! I remember I injured my chest / sternum doing weighted dips. When I went and seen him - after hearing what i 'do' - he said "all i can say is - what did you expect". Whilst prescibing anti inflammotrys. He clearly hated weight lifting. Apparently 4 times per week is too much. All weight lifting should be moderate. Machines are safer.

When I injured my shoulder he told me nothing was wrong!!! Seriously. I couldn't lift a coffee cup with sharp shooting pains going up and down amy shoulder and arm! Again, ant inflammotrys. I've still got the last 2 packets of anti inflammotrys that i've been prescribed.

Anyway, I called the surgery and calmly explained my situation. I have a weight lifting related injury but my doctor hates weight lifting and I feel he wasn't bothering as much as he would if he didn't have such an attitude about how I done it. I said that, really, I need a physio. But to get a physio I need a referal. Therefore, can you ask around the GP's and see if any have a recreational interest in lifting - or more of an open mind.

Not really interested, she just said "i'll just give you another Doctor". I was reluctant but had no choice. The guy wasn't a weight lifter he was - in my opinion - just a GOOD Doctor! He could tell straight away that something wasn't right. He was checking my shoulder blades! My shoulder blades! what a breath of fresh air. Anyway, after about 5 minutes he wrote a referal and I got to see a physio.

So, point is, just ask for another Doctor if you're not happy and see what happens.

KPj

EDIT - I later found out that you don't need a referral to see a physio. It's worth while asking around finding a private place and just pay per session. You can just get a biomchanical assessment, even if there's nothing wrong. This is highly recommended.