Fibromyalgia....

[Bluebutterflier]

Hi All

I had my Gastric band in April 2012. So far I've lost 48lbs....and im really positive about it. I feel its the best thing ive done in life regarding my weight issues.

Before I opted for the band, I chatted to my GP about my Fibromyalgia symptoms. I was told that hopefully by losing weight the fibro would decrease somewhat.

Well so far, it seems to be Increasing in pain, in symptoms in fibrofog.

So I was wondering if theres any other Fibromyalgia sufferers on here....
If so, how has your FMS been since you started losing weight?

 

[Bluebutterflier]

Just to let everyone know what Fibromyalgia consists of - Heres a list done by a friend in a group I am in.


*******************
1. PAIN- in the muscle: often described as aching, burning, throbbing, gnawing, shooting, tingling. Almost always exacerbated by exercise and may or may not be present at rest. Can be migratory and differing from day to day.

2. FATIGUE- From feeling tired to exhausted and requiring rest periods during the day.

3. SLEEP DISTURBANCE- not being able to fall asleep and or able to stay asleep. Unrefreshing sleep patterns " feels like I haven't slept."

4. PARESTHESIA- numbness or tingling. ( non dermatomal)

5. DEPRESSION- most often reactive as with chronic pain condition.

6. ANXIETY- may include panic attacks.

7. PERSONALITY CHANGES- usually a worsening of a previous tendency.

8. MOOD SWINGS

9. SUBJECTIVE SWELLING OF EXTREMITIES- i.e. feels swollen but no-one can find anything.

10. HEADACHES- tension and or migraine.

11. COGNITIVE FUNCTION PROBLEMS: calculation difficulties, memory disturbances, spatial disorientation, difficulty with concentration, short
term memory loss.

12. FREQUENT UNUSUAL NIGHTMARES- or being unable to dream.

13. DYSTONIA- stiff muscles due to involuntary contracture. Difficulty in moving tongue to speak.

14. FREQUENTLY SAYING WRONG WORDS

15. BURNING SENSATIONS

16. LIGHT HEADEDNESS- "Fibro Fog", spaced out, cloudy.

17. MORNING STIFFNESS

18. EASY BRUISING

19. MILD BUTTERFLY RASH- (LUPUS TYPE) May be photo sensitive.

20. NEUROGENIC INFLAMMATION- rashes, may be severe itching. NI causes the symptoms and signs of Dermatographia.

21. DISEQUILIBRIUM- Vertigo

22. MUSCLE WEAKNESS- variable with no "objective" abnormality to formal testing.

23. SCIATICA- like pain

24. PHOTOPHOBIA- Intolerance of bright lights.

25. ALTERATION OF TASTE, SMELL and HEARING.

26. LOW FREQUENCY, SENSORINEURAL HEARING LOSS.

27. DECRESED PAINFUL SOUND THRESHOLD.

28. TINNITUS- ringing in the ears.

29. OCCASIONAL EXAGGERATED NYSTAGMUS- involuntary rapid movementof the eye ball.

30. CHANGES IN VISUAL ACUITY- impaired function of the smooth muscle used for focus as well as skeletal muscles for tracking.

31. INTOLERANCE OF ALCOHOL

32. ENHANCEMENT OF MEDICATION SIDE EFFECTS

33. INTOLERANCE OF PREVIOUSLY TOLERATED MEDICATIONS

34. WEIGHT CHANGES- usually gained due to the lack of exercise through pain and or tricyclic antidepressants

35. RESTLESS LEGS

36. HEIGHTENED AWARENESS- of symptoms of HYPOGLYCEMIA 9 when blood sugar falls)

37. POSSIBLE CARBOHYDRATE INTOLERANCE

38. SYMPTOMS OF IRRITABLE BOWEL SYNDROME (I.B.S.)

39. HEARTBURN- secondary to I.B.S.

40. SUB-NORMAL TEMPERATURE

41. NIGHT SWEATS.

42. SENSITIVE TO TEMPERATURE EXTREMES

43. HEART PALPITATIONS

44. BREATHING DIFFICULTIES

45. HEART MURMUR-Mitral Valve Prolapse appears to be more symptomatic in FM than normal.

46. IMPOTENCE- reactive and occasionally.

47. SEVERE PREMENSTRUAL SYNDROME

48. FREQUENT VAGINAL YEAST INFECTIONS.

49. MUSCLE SPASM- twitching.

50. NON-CARDIAC CHEST PAIN- which may simulate cardiac disorder.

51. PELVIC PAIN.

52. ABDOMINAL WALL PAIN.

53. DRY EYES AND MOUTH.

54. TEMPOROMANDIBULAR JOINT DISORDER- usually due to abnormal muscle tone.

55. RAYNAUD'S- like symptoms.

56. CARPAL TUNNEL SYNDROME-possible related condition.

57. HAIR LOSS-secondary to psychological stress from FM.

58. VULVODYNIA- Vulvar discomfort or pain, burning, stinging and irritation.

59. PLANTAR ARCH-or heel pain. Exacerbated in FM.

This list of symptoms has been correlated by the Arthritis Foundation S.A.

 

[HiddenBeauty]

Even though I never was officially diagnosed, my mum has Fibro, and so we pretty much elected that I did too, as our symptoms were similar.

After surgery I must admit my mobility has got significantly better, to the point I'm happy wearing heels now and walking for ... well longer than I could.

I still get immense pain, especially after doing a lot of exercise (I'm not talking normal exercise pain, I'm talking three days before I can actually walk right again) or stuff that involves a lot of moving, carrying etc.

So I suppose the symptoms I still have are:

PAIN - occasionally, after lots of exertion. Some days I still have back pain just from waking up. But my mobility is much better than it was.

FATIGUE
COGNITIVE FUNCTION PROBLEMS
FREQUENTLY SAYING WRONG WORDS (getting my words the wrong way round)
BURNING SENSATIONS - I never had this.. but recently I have been getting the feeling in my arm, like someone is holding a flame to it.
LIGHT HEADEDNESS
MORNING STIFFNESS
HEIGHTENED AWARENESS- of symptoms of HYPOGLYCEMIA 9 when blood sugar falls)
SYMPTOMS OF IRRITABLE BOWEL SYNDROME (I.B.S.)
SENSITIVE TO TEMPERATURE EXTREMES
FREQUENT VAGINAL YEAST INFECTIONS. (ew i know!)
VULVODYNIA

So, I hope that helps a litle ?

 

[Big an Bouncy]

Im very like you just in the process of being diagnosed.Initially i felt fab losing weight and being more mobile,joined a gym but soon found gentle exercise was knocking me for six!The symptoms have built over the years and I have put it down to the weather,age etc.
Now my gp and I have gone over all the symptoms and come to the conclusion its Fibro,I have depression,fatigue,muscle and joint pain/burning,stiffness early morning,dry eyes,vertigo,word problems,brain fog,intolerence of noise and bright lights etc.I have found its got worse as i lost weight cos i can do more and tend to overdo things now.Im on Tramadol with paracetamol(it helps it work better)and Amyltripteline of a night to help me sleep,though I can sleep on a washing line during the day!All I can advise is get it diagnosed by a Rhumatologist on the right meds and not try to overdo things.Best of luck.Maz x

 

[Bluebutterflier]

It sounds like you both have Fibromyalgia....

I was diagnosed in 2010 by my GP at first then I was sent to Rheumatologist who done the test to see which areas were affected...I think I got 14 spots out of so many.

Since then I have a specialist nurse who's trained in FMS and Ive seen a Pain management doctor who has played about with meds with me to see which combinations ect work.

So Im on Tramadol & Pregabalin (some paracetamol to kick it in)...and Im just changing my anti-depressant from Citalopram as its not helping my depression and my sleep pattern is still affected, so back to a anti-depressant that I used before, which is Duloxotine -it has a mild sedative in, so it helps with sleeping and depression.

I do Wii fit almost every day....that's my excersizing....but i think I overdone it the other day with the Yoga on there, and now I have incredible pains in my stomach areas, to the point of coughing/sneezing/standing up/moving -all hurting badly.

This illness takes over you and makes you feel like your 90yrs old. I hate it.

Alongside it, I have other illnesses, including Hypothyroidism (underactive thyroid), and the meds sometimes clash, as Levothyroxine increases your metabolism/thyroid, and then your away in fairyland on Tramadol & Pregabalin, so your basically Zombiefied all day

Then to top it off, depression, a rotor cuff injury in my right shoulder, Idiopathic Intracranial Hypertension and Agoraphobia, Ocd problems and Lordosis of the lower back and Sciatica Neuralgia too...ffs just too much...I feel like a raggy doll!

 

[OOnion]

Basically anything that can't be explained - long long lists of often very subjective experiences a lot of GP's will then label as Fibromyalgia - for a true diagnosis you need to have had a whole batch of bloods and pain in four or more of the defined 18 pain sites and have been seen in a specialist center...there are too many people jumping on the bandwagon of "fibromyalgia" when they have unexplained symptoms which makes it very hard for those with an accurate diagnosis to then be taken seriously by the medical world.
I do hope things get better for you - Google and take a look at the work being done by the Pain research teams at UCL - they have done some great work on Fibromyalgia pain with some very positive outcome. Dr Tony Dickenson is the lead of the team - I have been to a few of his conferences and find him fascinating and informative.
Good Luck and I hope things settle.
x

 

[Wobbletogo]

pain in four or more of the defined 18 pain sites

I'm guessing you meant fourteen or more, not four otherwise the whole population would be diagnosed

 

[angiemason]

i was diagnosed with fibromyalgia about 8 years ago (long before it became fashionable) and rheumatoid arthiritis over 3 years ago all through blood tests etc ( i was initially tested for bone cancer ) i saw my physiotherapist yesterday and although she is very happy that i have lost so much weight it really hasn't made the difference i was expecting to the pain, she said because i have more energy and am doing more exercise i am getting carried away and knocking myself for six for the days afterwards, she is working out an exercise plan for me so i can sustain the exercise daily and not go hell for leather all in one go

 

[Big an Bouncy]

I know what you mean Angie,we think we can do anything and push the limits.If I do a few hours work without a break I pay for it the next few days.I have to break every job into smaller bits!

 

[shelbell]

Mine has worsened since surgery, but then I have got older and had another child, and had spinal surgery. I have a whole host of other illnesses including lupus so it's often hard to say which is causing what. Having children has had a major affect on me both times, so I've now been sterilised

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[HiddenBeauty]

This week has been the worst for me, I think I did burn myself out. I've been snappy, grumpy, sleepy and a number of other alternative dwarves. I feared I was getting depression again (I did two years at the Priory learning how to control my depression and pretty much see myself as "cured" .. but it's more I'm better at coping) and got really down. I didn't shower for a week or brush my hair until yesterday. I just didnt have the energy. And still yet I pushed on, working, trying to keep the house clean, even though It was making me worse and worse.

I have no idea if I have Fibro.. the doctors say I'm too young to test (my mum was younger than me when she was diagnosed!!) and that to "just loose weight" which is why I got the op in the first place. Now I don't have as much pain, I'm unsure about asking them to test again.

 

[Nellyphant]

I got diagnosed February 4th 2011 after 25 years of unexplained pain and all the other symptoms listed. I pushed and pushed for diagnosis after I had skin cancer in 2010 and was fed up with being pushed from pillar to post and fobbed off for everything else. Buckets of bloods taken, x-rays, scans and rheumatology appointments. Finally diagnosed by rheumatology with fibro and osteo-arthritis in both hips. The reason I had the surgery was to help with my pain and fatigue and make life generally easier for me. It has but I've just learnt that I'm actually not that much better. I went to my home county last week with my daughter and I'm still paying the price of visits, too much driving and walking. I managed to walk more than I could before but boy am I still paying for it! I'm conscious that I need to start toning up soon but unsure how to go about it without knocking myself for six. I found out recently that I'm still a patient at the hospital physio dept so I think a trip back to them for some specialist exercise for toning my core to help my back for a start would be a good idea.

Sucks doesn't it? I try to stay upbeat and positive but yesterday it beat me. Today I'm feeling like I'm coming out the other side. Luckily for me my daughter is off to her grandparents on Saturday so I can catch up on rest and sleep time.

I need to go and see my GP too as I've had to give up ibuprofen and I need more pain relief.

 

[Bluebutterflier]

Kitty -whoever said your too young to test is talking ********!....Anyone can be tested for Fibro. Your GP will do blood tests and send them off, and refer you to the rheumatologist -who can confirm it.

For others that have shared their stories, Thank you -I thought it was just me?.....So many people say 'lose weight and all these ailments should disappear' - if only it were that simple.

My life is about how I am in the morning. Making plans is hard for me, As I never know how much energy I will have, if im in incredible pain, or off my face on meds.

I still have some 'Hope'......That the slimmer im becoming, and the more fit im trying to be, via wii fit console and walking here and there, that perhaps just perhaps, my fibromyaglia will ease, and I will get some sort of life again!

 

[Big an Bouncy]

Ditto you are4 not too young you are being fobbed off there!You have bloods done and get referred to a rhumatologist for more bloodwork and tests,Im in that process at the moment.Every year for umpteen years I have complained to my gps about joint and muscular pain,weakness,depression and lethargy.Everything was put down to my weight.Well its gone now so what do they blame it on now?The Tramadol does ease the pain but take the Amyltripteline no later than 8pm or im on cloud 9 next day!