Okay, okay, yes, this post is late but It’s still Saturday somewhere in the world!
Its now day 6 of me blogging all week! Only one more day to go! Hopefully i’ll make it a decent one!
I thought today I would talk about treatments that I’ve tried over the past 4 years. This that may have worked for me, may not for you, but things that haven’t worked for me, may work for you. It’s a lot of trial and error. This may be a long post as theres a lot of different types and I may forget a few so lets get started!
I’ve basically had every kind possible, this is the first thing you should ask your doctor for, mainly to rule everything else out as there is no test for M.E or Fibromyalgia.
This is again to rule anything out. This doesn’t make you a ‘slag’ or anything of the kind, even if you have only ever had one boyfriend you don’t know how faithful or clean they are really. You might trust them and thats great but the fact is, you don’t know its just to rule everything out and also can check for anything serious like cancer too. DONT PANIC THOUGH its just routine really. Make sure you tell your GP about your ‘love’ life though, I wasn’t even asked when a GP suggested it first when it could be impossible for me to have any STD’s for all they knew. If you are worried about being judged you don’t have to go to a specialised clinic for the test you can have it done at your GP and no one would know thats why you’re there.
Tramadol - a strong painkiller
Pregabalin - also a painkiller but not as strong
Zopiclone - sleeping tablets
Assorted Vitamins (not prescribed)
Gabapentin - painkiller
Amitriptyline - antidepressant
Fluoxetine - antidepressant
I’ve tried a lot more but theres so many to remember and they're really big words.
Outpatients Specialist M.E Service
I was referred to Seacroft Leeds, and yes, you do need a referral. I found this service to be useless. To start with it was held in Leeds at 10:30am which meant I had to set off about 9:30am to get through rush hour traffic and be there on time which isn't the best for someone who doesn't sleep. I attended a one on one session first for them to understand me (apparently) and then i was placed in a group session for 10 weeks. Unfortunately I missed a few because of the early time and because it was in the summer which meant I was going on holiday. Not that I missed much though. Everyone basically sat around in a circle talking about regular parts to their life which I’m not gonna lie, i don’t care about and then for the last 30 minutes after the longest tea break they would try give you diet, medication, treatment etc advice which I’d heard before. It didn’t help at all. I’ve been referred again to try it out again and see now what it’s like a few years on but I’m not sure if its worth my time.
Unfortunately for me the Physio’s that I met didn’t really know about M.E or Fibromyalgia so I wasn’t given specific exercises. One Physiotherapist I saw even told me to go get a volunteering job and then get back in touch when I had. Its safe to say I didn’t see him again. If you do get referred for Physio I recommend trying to find someone who specialises in M.E although the one I did see at the pain clinic offered me nothing and said I was already doing as much as I could.
If you don’t know what Hydrotherapy is its basically like Physiotherapy but in a swimming pool in the hospital thats heated. It has bars and floats for you to help exercise and stretch etc. Using a pool can be easier as the water takes your weight so there isn’t as much pressure on your body. The problem with me is that I can push myself way too far on a good day so I was given all these exercises to do but I just didn't understand why it was so easy. The problem isn’t that my body is stiff or anything its just painful to move so I didn’t feel this helped me, a lot like Physiotherapy.
The Pain Clinic
I was finally referred to the pain clinic and waited ages for an appointment. Me and my mum waited about an hour as he was late so we had no hope for this appointment. We were wrong, we came out feeling so excited about all the treatments he’d offered me and how he said he will be able to help me and almost cure me of this terrible illness. How wrong were we to believe this. We heard nothing for ages, until we called them. We saw him again where he spent ages messing about trying to fix a printer and then promise all sorts again. I haven't seen him since.
One of the things I was offered was a Lidocaine Infusion which is a pain killer that is pumped into your body for an hour or two every two to three months which for me did seem to help my arms for a few weeks. I did go back and have now had three infusions, only after having to cancel my last one as I was on holiday unfortunately I’m going to have to keep chasing for another appointment.
I did see someone privately as I was told early last year that I would have to wait 8 months for an appointment at the Pain Clinic. I didn’t like it and it didn’t seem to do anything for me. I finally received my referral for the 21st May this year which means I’ve waited over a year for this appointment even though the minimum wait is supposed to be 18 weeks. Can safely say there will be harsh words had at this appointment.
I have been suffering from severe stomach pains for years now and I don't think they are connected to the M.E or Fibromyalgia so I finally went to see a gynaecologist. This was after several suggestions of me having STD’s and all that even though there was no chance of that. I had a Laparoscopy in January this year and thankfully they didn't find anything as they thought it could be Endometriosis but this also means I still don’t know what wrong. This department also failed me as after the surgery you're supposed to see them again up to 6-8 weeks after, my appointments not until July. I’ll leave that to you to work out how many weeks extra I’m pissed off with them for.
The Psychologist I was sent to through the NHS was useless. To be honest, he knew nothing about my illnesses and I had to tell him everything. His idea of helping me was telling me to go to mental health drama classes (with all the confidence I currently don’t have) and then get in touch with him.
My mum found me someone else privately to talk to who was lovely. She understood the illness a lot more and specialised in talking to people with M.E and Fibromyalgia. I always feel guilty when my parents have to pay for a treatment for me as everything just adds up to even more. I stopped seeing her before Christmas as she’d taught me enough skills and lets face it, with my sleeping pattern right now I wouldn’t be awake to see her anyway. But I would definitely recommend this but make sure they know about your illness.
The Perrin Technique
This is a form of massage that is specifically for people with M.E and Fibromyalgia. This was one of the first treatments besides medication that I tried. It would take a lot of homework as the therapist does a massage for you once a week and you have to try and replicate it, or a family member, on yourself twice a day. After nearly a year, i didn't feel like this was for me and I couldn't keep up with the homework. Also this is a private thing, you can’t currently get this on the NHS although Dr Perrin is trying to.
I was sent to see a rheumatologist which I didn’t understand a word she said. I’m not a racist person, intact I can’t stand racism like most people but because the doctor was from Germany and had very broken english I didn’t really get what she was saying. In the end I was basically discharged from the service and told I had Joint Hyper-mobility and that was it. My GP later decided I didn’t have Joint Hyper-mobility so I still don’t have a clue but it’s not treatable and basically doesn't make a difference.
I was the referred a health carer which meant a woman would come to my house every week for 6 weeks and talk to me and show me techniques that could help me like breathing, mindfulness, etc. This did help for the time I saw her and then I failed to keep it up, I just gave up basically. I would recommend this service, I’m not sure if its accessible all over the UK though.
YES! you can buy these pretty cheap, well I think you can. A lot of pregnant women use them although I don’t think it would help that amount of pain. I just find sometimes it can take the edge off the pain for a bit. Sometimes causing a pain or feeling in another part of your body can distract you. I find when I have a headache that it takes over all my other pains, I wouldn't suggest getting a headache cause its the worst pain but it’s like that as in it distracts you but not as painful.
I’ve most definitely forgotten something but this is just a few things I’ve tried. I understand not a lot worked and I’ve been pretty negative if they haven't but we’re all different people.
Take care and I’ll see you tomorrow for my final post for M.E and Fibro Awareness week!