do i have fibromyalgia syndrome
Posted , 17 users are following.
Hi there ive just signed up to this forum in desperate need of advice and help. Im 26 and 18 months ago was fully fit played regular sport and very active. Since then things have completely changed to the point where im struggling with day to day life and holding down a 41 hour a week job.
I will list my symtoms below please help me as im at the end of my teather now.
Waking up with no energy what so ever, achy muscles and joints all over for the whole day,
Severe lower back pain that never goes away,
Stiffness in neck with movement problems,
Easily fatigued and get headaches and dizziness after exercise,
Shortness of breath,
Constant throat mucus mainly in the mornings,
Most recently severe bowel issues losing a lot of blood on the toilet. (Up to half a pint).
Digestion issues,
Stress and mood problems,
Unbearable headaches,
Sleep problems,
Needing to go to the toilet to urinate excessively,
Numbness and tingling in bottom of legs and feet.
My main issues now are the lower back pains and all over muscle and joint pains with a constant lack of energy. These issues seem to have got alot worse over the last 12 months with my day to day life becoming almost unbearable. Its strange because ive always been soo fit and healthy but now even getting up for work is a challenge and i can hardly move because of the aches and pains but two years ago i could wake up at 6am and go for a jog. My life has had a dramatic change and friends and family have noticed the change aswell.
Any personal experience or medical advice would be a great help thanks
5 likes, 20 replies
emma99427 hugh07153
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hugh07153 emma99427
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emma99427 hugh07153
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I went to see my GP after my pain levels became unmanageable. I was used to the fatigue from my CFS but id not had the pain as bad before. Im incredibly lucky that I jave 2 gps I can see that are very clued up on Fibro. The first time I went I was sent for bloods to rule oug anything else. After they came back clear I was referred to the rheumatologist at the hodpital who went over A LOT of questions folowed by the pressure point test to which I had 16 of the 18 painful points. Is that something you have looked into before?
I also suffer with neck pain, headaches, sorethroat etc but get a lot of pain not only deep in my muscles but in my hips and lower back. I rarely sleep whuch is made worse by the cfs on top and I struggle to do any form of excercise including walking
I try not to get down as I have 3 young children and I hate them seeing me constantly poorly, its so frustrating!
Is tgere another gp you can see? As liks you say them having to look it up doesnt seem helpful. Maybe try bringing up Fibro yourself if you havent already. Some unfortunately need a nudge to even consider looking into it.x
emma99427 hugh07153
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hugh07153 emma99427
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thanks for your reply, ive not mentioned it to my doctor because i didnt want to push the diagnosis on him but i can see what your saying if i dont it might not get sorted. Its crazy because at 18 i played semi pro football and at 21 did amateur boxing so to be soo helpless now really is abit depressing you know. I have two boys myself and i love taking then to the park but now when i do im in agony for days after its crazy. My neck and back pains are constant sometimes i cant even pick things up off the floor. oh your friend has it so theres alot of young people that have it then? im totally new to this whole thing and know nothing about it what so ever. i might look into that 18 point thing. ive had blood tests but thats it soo far. do you not find it hard having fm with the kids aswell? have your symptoms got worse over time?
emma99427 hugh07153
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Personally I do find ot very difficult, my hubby has to do a lot to help most days which I hate as ive always been a believer in 50/50 in a marriage but I just cant do much to help right now it sucks. Ive got worse over the last 6months but ive gained quite a bit of weight due to comfort eating and not being active so I know thats making things worse.
Ive mever been particularly sporty but miss just being able to walk without been layed up for days after so it must be awful to go from being so active to where you are now.
I feel like im comming across negative, I dont mean to I just understand your frustration and litterally your pain xx
hugh07153 emma99427
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emma99427 hugh07153
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I deal with bad days by concentrating on the next day if that makes sense. I tell myself thats its a bad day but I always get through it I take gabapentin which is the 3rd lot of pills I tried and it helps a little. I just try to stay as positive as I can. My girls keep me goinf to, I want to improve for them
fibrogirlinmain emma99427
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deirdre._03652 hugh07153
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JerseyKaz hugh07153
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The first thing is the blood loss..if you have been losing blood for a while this can cause deficiencies of iron etc which can give a lot of other symptoms like the breathlessness, headaches, fatigue etc etc.
Sometimes doctors will say your bloods are normal and the ones they have done will be...but they may not have been testing for everything...eg a test for diabetes or routine blood screening will not usually include thyroid unless specifically asked for.
I used to be fit playing racketball twice a week but then this fibro kicked in and now I'm chuffed just to walk for 15 minutes in one go!
It sounds possible you may have a stomach issue which has lead on to these other symptoms over time. I would advise going back to your GP for more tests...quite often, cfs/fibro sufferers have low magnesium which can cause some of your symptoms. Also iron deficiency, usually simple to fix can cause many of the symtoms you listed.
The bottom line is more tests I'm afraid and dont be afraid to keep pushing them for answers! It took me 4 years to get a diagnosis!
Good Luck! JK
hugh07153 JerseyKaz
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janet01833 hugh07153
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katie1408 hugh07153
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haytophill hugh07153
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! was diagnosed with Rheumatoid Arthritis after 6 months of bizare blood tests including for Wild Pidgeon desease, because they found fluid on my left lung afetr a sleep apnia test. Everything kept coming back clear, so given a final diagnosis of secondary lung cancer and told the outcome was inevitable. On 4th April five years ago, I went through a VAT proceedure to remove the fluid, and for what it was worth, trying to re-attach the lung to it's lining. There were two of us operated on that day, John died in the September of the same year, from lung cancer.
Whilst recovering from the Vat P, I woke up one moring with the most severe pain in my fingers, worse that the chronic re-action to the medical tape used to protect the three holes in my side. I started taking Tramadol around 3am, more at 5am and more at 7am meant I could use my hands properly. Three days later my fingers became swollen over night, to the point I had to take my wedding ring off.
I was referred to the Rheumatoligy Unit, diagnosis confirmed as RA, but given such a dose of steroids that it has fried my brain, I can't switch off at night, can carry on a complex discusion with my boss whilst working out the solution to another problem. after 4 weeks of desperately reducing the steroids, Put on Methotrexate for RA, plus hydroxichloriquine, folic acid and Omeprezole. So with IBS, Sleep Apnea, it was of little surprise I was diagnosed with Fybromyalgia.
I had been sent for an OH referral from work, and was very very lucky to have a Rheumatology Consultant, who had worked with the British Olympic Team, the Canadian Olympic Team, and was considered as one of the best in that field. At the end of the referral, he asked if he could just do a couple of quick checks, and having found 6 painful responses to gentle pressure, advised me to go back to the RA clinic as he had no doubt I had Fybromyalgia.
I wear sport arm supports on my right arm from wrist to shoulder, to compress the muscles and ligaments which does help ease that pain, but when you feel in in waves through the bones, there is little releif other than 2 x Tramadol. I also wear sport hand sleeves on both hands, to ease the Ulner Nerve which suffers tightness in my right elbow. and the Carpul in the left.
Exercise has to be slow and on level ground. When I walk up any gradient, my hips start to stiffen slowing my pace, and if for any distance, it becomes hard work puting one foot in front of the other, the length of my stride shortening. My wife says it's my weight, but friends at work with Fibro have the same problems with walking up hill.
I have recently had physio and accupuncture on my left IT Band and knee joint, to releave the feeling of somebody tearing my nerves out of that leg over-night. It has eased the nerve pain in that area, but has made the pain in the attachments on the front ligaments and muscles just below the knee, painful and worryingly not stable. I fell recently on holiday in Cornwall, my left knee just gave way, decided the pain level trying to keep up on level ground with my wife was too much.
We are all different, reading below shows just how diverse Fibro really is. You need to find a good GP, I am GP managed for RA so have a really switched on GP that has looked after me for five years now, and discusses even the most simplest of problems as they can well lead to worse if not managed.
Then start with your pain areas, don't feel silly saying you can feel pain going through your bones, they are just as alive as muscles and nerves, else you wouldn't mend a broken arm. Ask for a DMARDS blood test, I have this monthly, and it really helps spot problems. One reading went fro 41 to 1825, so immediately contacted and told to come of Methotrexate. That was 6 months ago, and we are now able to see more of the problems Fibro presents, as they are not masked by the RA treatment.
I take a high level dose of amitriptyline at night to help me sleep. but not for depressioin. I suffer tiredness mid morning and afternoon, sometimes lack of attention, have ashamedly become abusive to my wife, and three years of weekly them monthly counsceling has helped, but you can't turn the clock back. Just don't think the simplest symptom is unimportant. You are not going made, just have untreated Fibro.