Fibromyalgia

Hi girls, I had to go to a Rheumatologist yesterday because I've had widespread pain for 6 years now and all my physios over the years have diagnosed Hypermobility Syndrome (faulty and weak connective tissue) which the Rheumatologist confirmed yesterday and I now have an official diagnosis however he threw a Fibromyalgia diagnosis in there too and I know from previous research vulvar problems are very common in Fibro. Does anyone else on here have Fibro?

Yes Sarah apparently I do! I had a diagnosis this week for the pain in the back of my head, the random pains anywhere else, headaches and the burning hands.

How does yours present and how do you treat it?

Hey Mouse, see you're staff now! It's very difficult for me to know what's fibro pain and what's coming from the joint issues because both cause full body pain. I take Ami to help me get refreshing sleep which is a bit hit and miss if I'm honest because the Ami also makes me tired in the day! Lyrica is licenced to treat fibro but I'm having less luck with that than expected, it helped with the widespread V pain for a while but has since stopped being as effective and never helped much with the full body pain so I'm struggling to get any of my conditions under control. Some people with fibro have had good results with Malic Acid which can be bought in tablet form but I tried it and got no help from it at all. Magnesium is also recommended but I already take that and don't find it helps my muscular pain. What helps the most temporarily with everything is working on trigger points (they pop right back in because of my joints but I get about an hour of reduced pain) and core stability exercises but again the effects don't last because my rubbish joints spasm all the wrong muscles up. Moist heat is supposed to be good for fibro so hot baths, heated towels on the worst areas etc and I do get a bit of help from hot baths but have to be careful not to go too hot because of the V. It seems one condition either complicates or rules out proper treatment of the others for me, I just go round and round in circles getting nowhere fast.

Sarah,

Please look into the above product. It makes your body produce more of its natural anti inflamitory glutathione. Many people, 50-80% are born without the gene to produce this substance. My mum has been on this for 4 weeks and is considering coming off all meds aside from this suppliment.

My mum has Lupus.

Try it! xxxx

Oh and she has no joint pain or swelling for the first time since she was 17....

the IC Network has a forum just for Fibro if you have not looked into that already

Thanks Claire I'll look into that, I'm all for anything that could reduce my meds. I think my HMS is alot more painful than my fibro because it damages my joints and soft tissue every single day so nothing ever heals. I have a hip that pops in and out of the socket and both my shoulders do the same, my neck grinds if I move it and if I bend my knees anywhere near anyone squeamish it makes them feel sick because I sould like bubble wrap. My SI joints are their own private hell on earth and restrict me in so many ways you wouldn't believe and if they get locked in a misaligned position the pain is unbearable. Oh to be anything like normal. But I will definitely look into it.

Thanks for the info Sarah and Claire. I'm dealing a bit better now and may even leave the house tomorrow - it's been a week!

Sarah how did your hyper mobility start? I have clicky shoulders - have we had this talk before? That started about six months ago, they click when I roll over in bed and my knees click as well. I'm hoping you are going to say that's just what happens

Mine's a genetic condition so I've got faulty collagen which means I have lax ligaments and have had all my life so it doesn't so much start somewhere as is always there. I had a hip that would dislocate in and out of the socket from when I was about 9 years old so it's royally knackered! A physio could tell you if you are hypermobile but lots of people have clicking shoulders, knees, hips etc because of a lack of core strength and not HMS so it may well be you need to work on some of those muscles like your lower traps, quads, Transversus Abs and glutes to stabilise areas. If you've seen a physio and they've never mentioned hypermobility to you it's unlikely you are and while it does go hand in hand with fibro so do alot of other things so I wouldn't panic just yet! Some people get what they call acquired hypermobility from too much stretching like dancers and gymnasts etc but that's not faulty collagen and can be reversed alot of the time with less stretching and more strengthening. HMS (the S is the difference between Hympermobility and Hypermobility Syndrome) means it's painful so it's become a syndrome whereas some people are hypermobile and never get pain. It's usually very easy for a physio to spot it though and is not something doctors know alot about so they frequently miss it. With pelvic floor issues it may well be you actually just have a weaker core than you need and the spasm in other muscles is snapping and creating noise so I'd start with getting your core strength tested, again the job of a physio everything to do with this seems to come back to physio doesn't it?!

Hey, I just posted this on the fb group. Not sure if it will be helpful at all but figured it would be better to put it up than not. It's about the supplement 5-HTP. Thought you guys might at least want to look up the research to see if it might be a good option. Vicki, I know you might be interested in trying a natural route first. This is from Health Canada.

Common name(s): L-5-Hydroxytryptophan, L-5-HTP (O'Neil et al. 2001)

Source material(s): Isolated from Griffonia (Griffonia simplicifolia (Vahl ex DC) Baill. (Fabaceae)) seed

Use(s) or Purpose(s): Statement(s) to the effect of:

Helps to promote healthy mood balance (Pöldinger et al. 1991; Zmilacher et al. 1988; Nakajima et al. 1978).
Helps to relieve symptoms of fibromyalgia (Nicolodi and Sicuteri 1996; Sarzi Puttini and Caruso 1992; Caruso et al. 1990).
Helps to reduce the severity and duration of migraine headaches when taken as a prophylactic (Titus et al. 1986; Bono et al. 1984; Sicuteri 1973).
To be used with a program of reduced intake of dietary calories and increased physical activity (if possible) to help in weight management by reducing carbohydrate cravings (Cangiano et al. 1998; Cangiano et al. 1992; Ceci et al. 1989).
Used as a sleep aid (Soulairac and Lambinet 1977; Wyatt et al. 1971).
Dose(s):

Healthy mood balance: 50 (Nakajima et al. 1978) - 100 mg (Pöldinger et al. 1991), 3 times per day

Relief of symptoms of fibromyalgia:
100 mg, 3 - 4 times per day (Nicolodi and Sicuteri 1996; Caruso et al. 1990)

Migraine prophylaxis: 100 - 200 mg, 2 - 3 times per day (Titus et al. 1986; Sicuteri 1973)

Weight management: 250 - 300 mg, 3 times per day (Cangiano et al. 1998; Cangiano et al. 1992; Ceci et al. 1989)

Sleep aid: 100 - 200 mg per day (Soulairac and Lambinet 1988; Soulairac and Lambinet 1977; Wyatt et al. 1971)
Directions for use:

All uses (excluding sleep aid):

Statement(s) to the effect of:
To minimize the risk of gastrointestinal side effects, start dosing at 50 - 100 mg, 2 - 3 times per day and slowly increase to effective dose over 2 week period (Birdsall 1998).

Sleep aid: Take 30 - 45 minutes before bedtime (Pizzorno and Murray 2006).

All uses (excluding weight management): Take with food (Pöldinger et al. 1991).

Weight management: Take 30 minutes prior to a meal (Cangiano et al. 1998; Cangiano et al. 1992; Ceci et al. 1989).

Duration of use:

Healthy mood balance:

Use for a minimum of 1 week to see beneficial effects (Nakajima et al. 1978).
Consult a health care practitioner for use beyond one year (Nicolodi and Sicuteri 1996).
Relief of symptoms of fibromyalgia:

Use for a minimum of 2 weeks to see beneficial effects (Caruso et al. 1990).
Consult a health care practitioner for use beyond one year (Nicolodi and Sicuteri 1996).
Migraine prophylaxis: Use for a minimum of 2 - 3 weeks to see beneficial effects (Sicuteri 1973).

Products providing 200 - 400 mg per day: Consult a health care practitioner for use beyond one year (Nicolodi and Sicuteri 1996).

Products providing > 400 mg per day: Consult a health care practitioner for use beyond 6 months (Titus et al. 1986).

Weight management: Consult a health care practitioner for use beyond 12 weeks (Cangiano et al. 1992).

Sleep aid: No statement required.

I was very interested in 5-HTP a while ago but I'm sure there was something I was taking that ruled me out of being able to take it, can't remember what it was now, perhaps Ami? If I hadn't started on Ami I would definitely have chosen to try 5-HTP, anyone who gives it a go please do post results.

Yes, I had fibromyalgia, but I've been symptom-free for about ten years now.
I was diagnosed with fibromyalgia about fifteen years ago after basically living on my parent's couch for two years in severe pain with no life (had minor symptoms for years before this). I had severe aches in my shoulders, back and knees (muscles and joints), plus "brain fog" and severe chronic fatigue. I went on Dr. St. Amand's guaifenisin protocol (I had started the low oxalate diet about two years before this). About a year into the guai treatment I also started a controlled carbohydrate diet (similar to the Zone Diet) for hypoglycemia at Dr. St. Amand's suggestion. Within three weeks of starting the controlled carb diet my "brain fog" and fatigue were gone, so those may have been hypoglycemia related, not FM symptoms. Over the next few years the rest of my pain disappeared slowly. I do not know if it was the guaifenesin or the low oxalate diet that helped the fibro, or perhaps some combination. Some doctors are starting to believe that what gets diagnosed with fibromyalgia actually has numerous root causes in the body. A few researchers have suggested that the hard lumps in the muscles of some fibromyalgia patients might be oxalate deposits and the guaifenesin breaks them up and helps them leave the body. This would make sense in my case, since I have genetic hyperoxaluria and it has been shown (in kidney stone patients) that people with hyperoxaluria store excess oxalates all over their body and often in the muscles/joints. I'm not sure what treatment actually cured me, but my doctor was completely dumbfounded. He says that FM doesn't just "go into remission" but after years of symptoms, I was symptom-free (and have been now for over ten years). My only treatments at the time were the guaifenesin, the low oxalate diet, the controlled carb diet, and timed calcium citrate. I also was very physically active and practiced daily meditation.

Heidi

Hey, Mouse. I also had burning hands (and burning mouth syndrome and burning eyes (like acid tears) and burning rectum along with a really flaming vulva . . .). Those also have all gone away over the years. Again, I can't say what did it for sure, but I was only on the four treatments listed above. I personally believe oxalates are the key, and that gauifenisin somehow made the diet work faster or more effectively. I hope you find some relief soon. I remember how horrible it was to be house-bound. Sometimes I just had to make myself go out to keep feeling like I was connected with the rest of the world and life.
Take care,
Heidi